Max Marangella is a vivacious seven year old who like all little boys his age is always on the go and looking for trouble! To everyone’s great joy he is in the 2nd grade, something we could have only dreamt about six years ago when Max’s struggle began. Max was born with three major congenital defects, one of the heart (Tetrology of Fallot and Dilated Aorta), a connective tissue disorder, and Congenital Short Gut (which means Max has only about half the intestine of a typical child).
He spent the majority of his first year of life as an inpatient at Phoenix Children’s Hospital. In fact Max was born on May 2nd 2001 and did not go home until just before Christmas 2001! Everyone in the hospital became our extended family: nurses, doctors, child life specialists, therapists, and pharmacists — everyone was part of “Max’s Team”. Back then we had a saying: “Either you’re part of the Team or you need to get out of our way!” Max had major, major obstacles to overcome and we planned to make sure he was successful! In fact, Max has undergone 30+ surgeries and procedures to date, the first at just 7 days old and open-heart surgery at only six weeks old.
He has made progress that no one could have anticipated – no one except his parents and big sister who never once gave up hope!
Today Max is a happy, active child who entertains all with his sense of humor and is quick to hand out hugs and kisses! Max is a very “typical” seven year old boy, active to the point that most days he exhausts his parents! He loves to play soccer and baseball in the back yard, in fact he is a huge Juventus and NY Yankees fan. He also loves riding his bike and driving his big sister crazy just as any little brother should! Just the fact that he can enjoy these very “typical” activities is in and of itself a huge miracle.
During the summer of 2007 Max underwent his fourth heart procedure. We spent most of our summer at Johns Hopkins Hospital in Baltimore, MD so that Max’s aorta could be repaired by the country’s leading surgeon for this type of open-heart surgery. We now travel at least once a year to see these incredible doctors in Baltimore. Max truly is the sunshine of our lives and we know that this surgery was important to maintain his quality of life and deter further damage to his heart valves. We also know that this may not be his last open-heart surgery and we pray that we will all be strong enough to continue on this road we have been given.